posted
In a previous post, I mentioned that I had a negative lyme test in October, and someone replied that if it was a western blot, bands of reactivity would be listed. I finally got a hold of my actual lab sheet. It was a western blot, but all it says is negative, nothing about bands of reactivity.
Posts: 10 | From Minnesota | Registered: Dec 2005
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If you had a Western blot, there should be bands recorded.
-- maybe you can request the copy of the test results from the lab or the ordering physician?
if you get them, here is a great guide to help interpret them:
UNDERSTANDING LYME WESTERN BLOT
Charles Ray Jones, M.D.
There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.
Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Western Blot IgM surveillance criteria includes only two Borrelia burgdorferi genus specie specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi genus specie specific antibodies.
CDC Western Blot IgG surveillance criteria includes 18 23 30 37 39 and 93 and excludes bands 31 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus specie specific antibodies in a Lyme Western Blot IgG and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including the Borrelia burgdorferi induced Lyme disease.
CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28 41 45 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus specie specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus specie specific antibodies.
This does not make sense.
CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 7000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives not false negatives.
Rev. 8/23/04
Posts: 8337 | From the other shore | Registered: Jul 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You need to press the doctor to run a test from a lab like IGenex that reports the bands
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
You probably need a different doctor. Have you posted under "Seeking a Doctor"? Local Lyme support groups may be able to help. As I recall, you are college-age. Is your family on-board as far as helping you with this? You will probably need it.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
I do have the name of an LLMD, I will contact her if I feel much worse again, I've actually been feeling a lot better these past two weeks since my previous post, the diet changes, acupuncture and chinese herbs have been working pretty well except for the one relapse in Late December. I haven't had 2 weeks this good since like a year ago, and I still am unsure as to whether it might be something else. Someone on another forum mentioned the thyroid, and I did have TSH tests for the thyroid last summer which were a bit high, and had increased significantly between May and August. My doctor said not to worry it wasn't high enough yet, but responses on other forums said that it was high enough and my symptoms could be hypthyroidism, so I'm going to get more of those tests soon.
Posts: 10 | From Minnesota | Registered: Dec 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Is your doctor and endochronologist? Even before my levels were high enough I was being reffered.
If you have lyme......... I wouldn't wait around!
Bad bacteria is invading your body doing damage. You really don't want to get any sicker.
Just my opinion. Sick 8 years toatal w/ 1 year of meds and feeling better.
Good luck,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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quote:Originally posted by ThunderSnow: It was a western blot, but all it says is negative, nothing about bands of reactivity.
Then it's probably from some generic lab, like Quest. [ugh]
I would be sure to get tested if you have been bitten and/or suspect you could have Lyme. Waiting only means a longer recovery time, if at all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Thundersnow. Nice name!
Bad labs don't report on the bands correctly, overlooking important bands that would only react to borrelia bacteria. What that means is you could have a positive band that's specific only to Lyme, and they would still report it as a negative test. Your lyme disease might continue, unchecked, till it kicks your butt!!!
Lyme is FAMOUS for messing with your hormones, notably your thyroid. That's one of the first things my regular duck (pet name for doctor) figured out, long before we figured out the Lyme. A normal person's TSH should be between 1-2. Don't let someone tell you differently. Yeah, you're not going to DIE if it's 3 or 4, but you're going to notice and begin to have 'subclinical hypothyroidism.' It will be hard to differentiate your symptoms from Lyme, which you'll have on the back burner too.
If you choose not to pursue Lyme, at least get a good test from IGeneX. Wherever you got your western blot, if they don't report on all your bands, it's not a decent western blot. Your thyroid is already a big clue.
Good luck to you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote: If you have lyme......... I wouldn't wait around!
Bad bacteria is invading your body doing damage. You really don't want to get any sicker.
I'll explain more fully my reason for waiting at this moment, although I will try to get an Igenex test along with more thyroid tests. The reason is I'm not getting sicker at this point, the changes in diet and chinese medicine have actually made a big difference (with occasional relapses), so I don't feel very desperate at this point. That is opposes to last September, when I did feel really desperate and thought that if it continued like it had been I would be completely nonfunctional within a few more months, even at that time it would have been extremely difficult for me to even write a coherent message on this board. If I had known about Lyme at that time (I knew of its existence but not much else and hadn't suspected it for me), I would have been much more desperate.
Also, I just recently read a book called "The Untold Story of Milk" by Ron Schmid, a naturopathic doctor in Connecticut. I didn't read it because of it having anything to do with Lyme, but I was surprised when I found out that he himself had lyme and was able to completely recover without taking any antibiotics. His story of how he did it is at this website, http://www.westonaprice.org/moderndiseases/chronicdisease.html Compared to the stories on this board and elsewhere about people who are still sick after being on antibiotics for years, he seems to have found a more effective way, at least for him.
I know that I might change my mind in the future if I start to feel a lot worse for an extended period of time, and I do have the name of an LLMD that is somewhat near me given by a replier to my previous post.
Posts: 10 | From Minnesota | Registered: Dec 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
If you have lyme even when you said I dont feel very desperate you should read this info contained in these links. Lyme dose not go away it comes and subsides but every time it does your next reaction will be worse if your lucky. Lyme can cause heart block nerve damage etc etc etc and the list goes on.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by ThunderSnow: The reason is I'm not getting sicker at this point, the changes in diet and chinese medicine have actually made a big difference (with occasional relapses), so I don't feel very desperate at this point.
Lyme can be very deceiving. Good luck getting rid of it without abx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Michelle, please answer some questions for me. I've been hypothyroid 20 yrs, prior to lyme illness.
Just 3 weeks ago I had my TSH level checked and it came back .08 ulu/ml with lab ref range .34-5.60. I read that as too low and my internist said no that ref ranges are for someone not taking replacement thyroid hormone. I'm taking 150 of synthroid and he considered my result to be in the good range.
I'm questioning his thinking. Please tell me your thoughts?
Thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by map1131: Michelle, please answer some questions for me. I've been hypothyroid 20 yrs, prior to lyme illness.
Just 3 weeks ago I had my TSH level checked and it came back .08 ulu/ml with lab ref range .34-5.60. I read that as too low and my internist said no that ref ranges are for someone not taking replacement thyroid hormone. I'm taking 150 of synthroid and he considered my result to be in the good range.
I'm questioning his thinking. Please tell me your thoughts?
Thanks, Pam
Hi Pam.
Is this a regular duck or an endocrinologist saying this?
The American *** 'n of Endo Ducks decreed a coupla years ago that the new reference range was .3-3.0...and really, most people's range is between 1-2.
Labs shouldn't oughta be using those old reference numbers any longer.
Your number DOES seem pretty low to me! I would think you would be getting kind of hyPERthyroid. Do you have a really fast pulse, feel warm, etc.?
My endocrinologist duck adjusted my meds only per the guideline numbers, aiming for a number between 1-2. When I recheck levels, it's without regard to whether I'm on Synthroid. (Which of course I am.)
I'd think your doc should be giving you a bit LESS Synthroid, bumping you DOWN by increments of 25 mcg. and seeing if you come into range.
But I am NOT a doctor!
Maybe most importantly, how do you feel? Lyme and thyroid problems really can feel pretty similar so it's important to get the thyroid thing in range so you don't wind up blaming one for the other..!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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David95928
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Member # 3521
posted
For whatever it's worth, my first symptom to get medical attention was thyroid abnormalities. It's been a number of years but my recollection is that I had symptoms, a normal T3, an elevated Free T4, and a slightly elevated TSH. The doctor described this as "an intereting case which is bad for you." The initial diagnosis was infectious thyroiditis. However, as I failed to improve over a number of months, the diagnosis was changed to Graves disease and I got radiation and now take synthroid. My guess now is that the original diagnosis was correct.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Michelle thanks. So you see that .08 has more on the hyper side? No I have classic hypo symptoms cold hands and feet. Wearing 3 layers around the house and still being cold.
I'm having lots of hands and feet problems and I was hoping low thyroid and increasing my synthroid was the answer. The alternative was that my latest tick bites in May 05 had put some more bad guys in me.
My doc is an interist. I know that sometimes you need to go to a specialist to get real treatment for thyroid disorders.
So my numbers don't match the real story? Thanks for advising.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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